In this study, we found a high proportion of patients with SCD had a history of hospital self-discharge. Patients with lower trust, and those who reported difficulty in persuading medical staff about sickle cell pain, were more likely to report having ever self-discharged from a hospital, even after controlling for self-reported hospital utilization for sickle cell pain, and the patient’s 5-year toxicology screen history. Because hospital self-discharge is potentially dangerous,1–3
our study reveals an understudied aspect of how low trust and poor healthcare experiences may put patients with SCD at risk for poor outcomes.
In our study, 46.5% of our sample reported ever having self-discharged from a hospital, a figure which is much higher than the 14% found by Elander et al. in their United Kingdom (London-based) sample. Other differences in our two patient populations may account for this discrepancy. Compared to the Elander sample, a much greater percentage of our patients reported ever having difficulty persuading medical staff about their pain (65% vs. 39%). As difficulty persuading about pain was independently associated with an increased hospital self-discharge history in our study, one might expect that our sample, which had a higher percentage of patients reporting difficulty, would also be found to have a higher percentage of patients reporting a history of hospital self-discharge. A second difference between the two patient samples is that our sample of patients experienced a greater number of hospital visits in the 12 months preceding the study compared to the Elander et al. sample. If this difference reflects an underlying difference in the overall hospital utilization experiences of the two groups, then our sample of adults would have greater opportunities, on average, than the Elander sample to experience hospital self-discharge. Other factors, such as patient behavioral or cultural differences between patients in the U.K. (with a national health system) and the U.S. (without a national health system), might be explored in future studies.
It is important to note that the wording of the hospital self-discharge item as used both in our study and by Elander et al. would not only capture AMA discharges, but additionally may capture other sudden decisions about hospital discharge made by patients. A national-level study of AMA discharges among adults with SCD in the U.S. which uses hospital records and/or chart review is needed in order to provide a more generalizable estimate of the prevalence of AMA discharge among this patient population in the U.S.
Elander et al. suggest that while hospital self-discharge among SCD patients may be interpreted by many as a sign that the patient engages in problematic use of opioids or other substances, it may be more appropriate to view this behavior as a sign that the patient has received inadequate management of their pain.19
In our study, hospital self-discharge tended to be associated with having a history of substance abuse as operationalized by a positive toxicology screen for cocaine or marijuana use during any admission in the previous 5 years. Elander et al. found that hospital self-discharge and other so-called “concern raising behaviors” such as use of illicit substances were found to be significantly associated with patient attempts to obtain relief from their pain, but were not significantly associated with symptoms of actual substance dependence or addiction.19
For example, each instance of illicit substance use reported by the patients in the Elander et al. study described patient attempts to use marijuana in efforts to manage pain, to relax, or as alternatives to prescribed analgesics. Clinicians in the U.S. who observe positive toxicology screen results for SCD patients may see these results as casting doubt upon the legitimacy of the patient’s pain reports, thus causing a reduction in the amount of pain medicine provided to the patient, when in fact, a substantial percentage of these results may reflect SCD patients attempts to manage their pain outside of a hospital setting. This potential discrepancy between clinician interpretations of the meaning of positive toxicology screen results for SCD patients, and the actual significance of these results for many patients as reflecting attempts to manage pain, could contribute to interpersonal conflicts between the clinicians and patients, and ultimately, patient self-discharge and decreases in patient trust in clinicians. Further, to the extent that SCD patient positive toxicology screen results reflect use of illicit substances for reasons other than attempts to manage pain, this should signal for clinicians a need to refer the patient for substance abuse treatment and counseling in addition to (and not instead of) efforts to manage the patient’s pain.
Our study is among the first to show empirically that persons with a history of hospital self-discharge have lower levels of trust in the medical profession. Discharging oneself from a hospital could cause a patient to view future healthcare experiences in a more negative light, and cause the patient to have lower trust in the medical profession. Healthcare providers often label patients with a history of leaving AMA as challenging patients. Seeing in the medical record that a patient has left AMA before may bias the provider to view the patient in a more negative light, and consequently affect the quality of their communication with the patient, leading to lower patient trust. Alternatively, a patient could already possess lower trust in the medical profession due to poor quality interpersonal experiences, and thus be more likely to self-discharge from a hospital during a future acute care visit due to a heightened wariness or greater level of anxiety.
The most consistent and robust predictors of trust found across studies in the literature are the quality of previous interactions with medical care.23
Poor physician communication, and experiences of conflict with staff have been associated with lower ratings of trust among a wide variety of patient populations.24–27
Interestingly, we found a relationship between trust and hospital self-discharge even after controlling for the quality of previous interpersonal experiences as measured by prior difficulty persuading staff about pain. Future studies should examine the relationship between trust and hospital self-discharge history while controlling for other measures of previous interpersonal healthcare experiences among this patient population.
There are limitations to the current study that must be considered. First, as a single institution study, these results may not be generalizable to patients with SCD seeking care at other institutions. Also, we did not assess the actual reasons why patients chose to self-discharge. Thus, while our data suggests that patient perceptions of poor quality care contributed to this behavior, we cannot state this definitively. The validity of a self-reported annual hospital utilization measure as used in this study may be limited by inaccurate patient recall. However, we compared our patient’s self-report of annual hospital utilization with chart documented hospital utilization in the previous 12 months and found that the two measures were correlated in the appropriate direction, thereby giving us greater confidence in the validity of our self-reported measure. Finally, the cross-sectional nature of the data in this study makes it impossible to specify with certainty the causal directionality of the associations found here. Prospective research must be conducted to help tease apart the potentially complex relationships among trust, interpersonal experiences with care, and hospital self-discharge.
Adults with SCD who have ever self-discharged from a hospital have lower trust in the medical profession, and are more likely to report having had prior difficulty persuading medical staff about their sickle cell pain. The clinical consequences of hospital self-discharge in this patient population must be examined, and the specific reasons behind this behavior must be further elucidated, so that clinicians and researchers may be able to design interventions to mitigate the occurrence of this potentially dangerous phenomenon.